Fecal calprotectin test

[bobj]

So here's my plan: I am going to go into the doctors and DEMAND they do a fecal calprotectin test to see the IBD I believe I have (they think it's IBS).

They did a CT scan and didn't see anything before. I think I was in a point of remission for that test though, so I feel as though like if I ask for this, I have ONE chance to do this right. I cannot afford to provide a sample when I'm in remission, so how exactly do I determine when my bowels are swollen?

Edit: is a fecal calprotectin test the most effective way to determine IBD? Or is there some other method I can ask for/demand? I need to take control of my own health, because if I don't order the doctors to do these tests I'll forever be left in the wayside with a diagnosis that there is no scientific verifiable method to prove or disprove of.

 

[Pangolin]

Fecal calprotectin is a very good test for diagnosing intestinal inflammation (not always IBD). You really can't be sure of an IBD diagnosis without a colonoscopy, but fecal calprotectin does seem like a pretty good thing to start with. If it turns out to be normal, then there's a high probability that you do not have significant intestinal inflammation or IBD. If it's not normal, then I would imagine that doctors would be more inclined to give you a colonoscopy and get you properly diagnosed faster.

 

[bobj]

Fecal calprotectin is a very good test for diagnosing intestinal inflammation (not always IBD). You really can't be sure of an IBD diagnosis without a colonoscopy, but fecal calprotectin does seem like a pretty good thing to start with. If it turns out to be normal, then there's a high probability that you do not have significant intestinal inflammation or IBD. If it's not normal, then I would imagine that doctors would be more inclined to give you a colonoscopy and get you properly diagnosed faster.

Well see, in order for me to get a colonoscopy, I need to be seen by a gastroentorologist. In order to see one of those doctors, they need to get a referral letter and not think it's a "waste of their time" to see me.

The current quack I'm dealing with (who has since been fired and reported to the college of physicians and surgeons) thinks it's IBS, doesn't seem to want to do any further testing and I'm stuck in limbo. Six different GI's have rejected me, I want to PROVE that I have IBD so that the next doctor can write a referral letter with substantiating evidence behind it that I do indeed have IBD. Because as it stands these dummies think that I have IBS, and I know for a fact that I do not, it's unfortunately much, much worse. I do not want to have this test done and to be in a point of remission and have the test come back negative if I ask for it. I'm kind of all on my own, such is the state of 'healthcare' in this country.

 

[Scipio]

. Six different GI's have rejected me, I want to PROVE that I have IBD so that the next doctor can write a referral letter with substantiating evidence behind it that I do indeed have IBD. Because as it stands these dummies think that I have IBS, and I know for a fact that I do not, it's unfortunately much, much worse.

What do the docs say when the insist it is IBS? What is their evidence and reasoning that eliminates the possibility of IBD? For six different GIs to dismiss the possibility of IBD means that there must be pretty strong evidence against IBD for it to be so uniformly convincing.

If we understand why they are so convinced we can perhaps think of what additional evidence should be gathered to settle the question.

 

[bobj]

What do the docs say when the insist it is IBS? What is their evidence and reasoning that eliminates the possibility of IBD? For six different GIs to dismiss the possibility of IBD means that there must be pretty strong evidence against IBD for it to be so uniformly convincing.

If we understand why they are so convinced we can perhaps think of what additional evidence should be gathered to settle the question.

There was one CT scan done, one Xray the next time I went into the ER (which the doctor said I was 'constipated' from what the Xray was showing) and bloodwork done both times.

I went in three days after experiencing the explosive pain I THOUGHT was appendicitis. They ruled out appendicitis and cancer. The doctor started poking and prodding around my abdomen which made me wince in pain. He then had a nurse catheter my arm and sent me in for a CT scan. Said that section of my abdomen appeared fine, my appendix was "perfectly healthy." He said something absurd like it being due to muscle pain in that area or something.. This is not external pain I'm feeling, it's INTERNAL. I know the difference. I thought it was appendicitis and my appendix had/was beginning to rupture. It felt like a bomb went off inside of me. All I was doing was sitting in my chair at the desk reading something on YouTube and then BOOM! I sat up so fast and did not feel right.. I must've been white in the face, it was terrifying to experience.

Anyhow, the ER doc said he thought it might be IBS, because apparently the CT scan is the be-all and end-all of diagnostics used to prove or disprove of IBD and the colonoscopy I keep hearing about is just something they like to do for fun. I guess the doctors get all sorts of entertainment from shoving a long winding tube up someone's arse. These guys like (and prefer) to sit in their offices all day playing Candy Crush and not doing medical work.

I know for a FACT this is Crohn's just because of the adverse and VERY serious reaction I had when I took one 200mg Advil for pain I was experiencing. I've done my research on this, IBS sufferers are free to take as much Advil as they desire. Crohn's sufferers are NOT. Not to mention the plethora of other symptoms I'm experiencing that point to this being IBD, and not IBS. And did you know what the doctor tried to prescribe me for pain? CYMBALTA. Not codeine, not Tylenol. Cymbalta, a black box antidepressant which brings with it a myriad of other complications for many people who take it!

I digress. There isn't even so much as a verifiable, scientific method used to test for IBS. In my opinion, I don't think IBS exists. I think it's actually a precursor to what can evolve or develop into Crohn's one day, because I did have pain since about 2012 in my liver area where I described it as feeling like "1000 microscopic needles stabbing into my liver all at once." Someone else described their pain as being like someone shoving a handful of glass through their stomach downwards. Sometimes I still feel that, rarely however. the pain on my lower right side (where my ileococal valve is) is persistent, and chronic.

 

[Catherine]

Suggest also requesting blood tests. I would get calprotectin are pain event.

I would try a ibs diet like FODMAPs. This diet made my ibs much better. My daughter who was later dx with crohn's if anything it made her worse.

 

[bobj]

Suggest also requesting blood tests. I would get calprotectin are pain event.

I would try a ibs diet like FODMAPs. This diet made my ibs much better. My daughter who was later dx with crohn's if anything it made her worse.

I looked into that fodmaps diet just now. Tbh, if anything, the foods listed there make my symptoms MUCH worse, especially brown rice. So far, I think I've put myself into a state of semi remission by eating nothing but Minute Rice and ground up chicken I shredded up in a food processor.

'Healthy' foods tend to make my symptoms worse. Thanks for the info though

 

[Scipio]

.So far, I think I've put myself into a state of semi remission by eating nothing but Minute Rice and ground up chicken I shredded up in a food processor.

I do not recomend that you eat a purely Minute Rice and ground chicken diet for very long. If you do you are headed for some serious vitamin deficiency diseases - probably starting with scurvy.

 

[bobj]

I do not recomend that you eat a purely Minute Rice and ground chicken diet for very long. If you do you are headed for some serious vitamin deficiency diseases - probably starting with scurvy.

My guts have been thanking me IMMENSELY for it thus far. I agree with you though, which is the reason I've committed to trying to find a treatment plan for whatever it is that is ailing me thus far

 

[asadmom]

Colonoscopy is a rather simple procedure. I don't know why if a patient insists on it for peace of mind (trust but verify) it's still denied.

There are two people in this picture: the parient + the doc.

 

[mrbianos]

If it is Medicare that a patient is dealing with, I believe Medicare needs the Gastroenterologist to give Medicare a valid reason to order a colonoscopy.
But I may be wrong.

If it's Australian Medicare we are talking about my process went like this.

GP Appointment (Bulk Billed) --> GP Referral to General Surgeon (Bulk Billed) --> General Surgeon Appointment ($170 w/ $90 back from Medicare) --> Hospital Visit 4 weeks later for endo/colonoscopies (Bulk Billed).

 

[paddywack]

Quickest way to get the dreaded colonoscopy, for me, is to report blood in stool.

That and severe dysphagia got me my first GI referral. That round of doctors got the skin condition in my esophagus dx'd.
It took avoiding doctors for 10 years and getting pretty sick to get the crohn's diagnosis.

That took a capsule endoscopy.
They couldn't see the extent of the damage until then.

I asked the doctor if maybe, instead of lots of ulcers, it was just the same one from the pill cam rotating or something.

I thought I was funny, even if nobody else did.

 

[paddywack]

I know for a FACT this is Crohn's just because of the adverse and VERY serious reaction I had when I took one 200mg Advil for pain I was experiencing. I've done my research on this, IBS sufferers are free to take as much Advil as they desire. Crohn's sufferers are NOT. Not to mention the plethora of other symptoms I'm experiencing that point to this being IBD, and not IBS.

I'm not sure what you mean about Advil.

NSAIDs are to be avoided because they're absorbed by the stomach, which means that with long-term use, it can make inflammation worse.

Tylenol is absorbed by the liver, which is why Tylenol/acetaminophen is the recommended OTC pain relief for IBD.

If you had a reaction to ONE pill, that's atypical and sounds more like an allergy.

Fun thing with IBS, it is possible to have IBD and IBS.
My GI said Monday that IBD puts you at greater risk for IBS.

What are your lab results saying? Not to me, I'm not asking for your text results.
But they should be looking at inflammation levels, hemoglobin, iron studies, etc.

Also, have you ruled out things that can cause GI issues that aren't GI disease specifically?

Things like Mast Cell Activation Syndrome?